Growing up with epilepsy certainly made for some interesting times for my family and I. Doctor visits, medications, and hospitalizations became the norm, but so did my weekly ballet and piano lessons. Despite lifestyle changes, I still thoroughly enjoyed a childhood full of laughter, hula-hooping and summer evening games of Man Hunt. My mother always told me, “God wouldn’t give you anything that he didn’t think you could handle.” Her words made the toughest times easier to deal with, which gave me a sense of lasting strength. Looking back, those are really the things that I remember, and I thank my family for that. We managed to find humor in situations where appropriate (laughter is almost always appropriate) and no matter how much of an emergency, there was always calmness surrounding me.
Doctor visits as a child were always somewhat of a challenge. I found it difficult to describe my seizures to others and the best thing I could come up with was calling it my “funny feeling.” Although I had been having seizures since I was an infant, they never showed up on EEG’s, and it wasn’t until I finally had one in front of a doctor that they were able to diagnose me. The difficulties with diagnosing and treating my epilepsy also led to trouble with the school system and my teachers. I was faced with whirlwinds of labels being placed on me, teachers telling me that I needed to stop spacing out, and even had a few teachers tell me that I was dumb. I learned quickly and early that I needed to take these situations and turn them around, using them as motivation instead. I was determined to prove that I was intelligent, talented, and so much more than "the girl who has seizures." Epilepsy is something I have, it is not something that I am.
Around 11 years old I became cognizant of the impact that this rollercoaster ride had on my family and began to feel a sense of self-imposed guilt. I worried that I was taking attention away from my older brother and that I was making my parents worry too much. Couple that with becoming a defiant teenager and you were left with a young girl who was incredibly strong, too stubborn for her own good, and in serious need of some independence.
Prior to seeing Dr. Devinsky, I was being treated by another doctor who tried keeping my epilepsy under control. I started a new medication but something wasn’t right. I didn’t feel well. Under the impression that it was seizure activity, the doctor continued to raise my dose over a course of nine months. By that time, my vision was as if I was looking through static on a television screen, I had constant headaches, and every time I moved my head, my brain felt as if it was bouncing around inside my skull – similar to those bobble head figurines that some people keep on the dashboard in their cars. One evening I couldn’t recognize the notes on the sheet music I was looking at, and I had absolutely no recollection of walking to the music school. I had been playing piano since I was two years old – how was that possible? I could barely eat, had lost an immense amount of weight, and my skin had become a very unattractive shade of yellowish-gray.
My parents and brother had been making numerous trips to my school in Connecticut that year due to multiple hospital visits, but a sunny Saturday afternoon in April was the turning point. I remember waking up on my dorm room floor after having passed out, and phoned my mom asking her to come get me. Something was very wrong. My mother drove me home to NJ and the next day I was in Dr. Devinsky’s office. He took one look at me and immediately knew that I was toxic from my medication. Although much of this experience is fuzzy, I recall lying in the bed at St. Barnabas Hospital, overhearing a different doctor telling my parents that he wasn’t sure I would make it. That was all I needed to hear. I had so much going on; my brother was graduating college the following weekend, it was Passover, my term as President of University of Hartford’s RHA was coming to a close, and I had final exams coming up. The way I saw it, I just didn’t have the time for this and needed to get better as quickly as possible. I believe that laughter truly is the best medicine, and know in my heart that it was our laughter, smiles, and jokes that nursed me back to health so quickly. My family never ceases to amaze me; they brought our Passover Seder to my hospital room. There’s a saying on Passover, “Next year in Israel.” Instead, we said, “Next year at a dining room table!”
My epilepsy has been under control now for about two years and I live a very healthy and happy life. I re-taught myself how to play the piano and even learned to play the guitar. Currently, I am working towards completing my Master of Fine Art degree in Graphic Design part time, and work full time as a graphic designer. My mother and I also run a small side baking business and love working together.
From a young age my family instilled in me that having epilepsy made me special, not different. I sometimes wonder if I would be this strong, had not grown up with the challenges I faced throughout the past 27 years. The amount of love, strength and life in my family is awe-inspiring and I could not thank them enough for being there for me, and for showing me how to be there for myself. If there are any words that I could pass on to others who struggle with whatever life hands them, it’s that you have to find your inner valor. Life’s ups and downs are inevitable for everybody but it’s how you play the cards that you are dealt that will form your attitude towards the outcome. Facing your challenges with willingness, hope and strength, even when you’re not so sure you have much strength left, is vital to maintaining a happy and successful lifestyle. No matter how much you might feel like giving up, that’s the moment when you need to give more, and I can promise you that there is always more to give.